On the 29th nov i went to A&E reguarding possible stroke symptoms as i suffered from a migraine which gives me numbness and visual disturbances and have done for the last 3 to 4 years. This particular migraine didnt seem to subside which was actually obstructive hydrocephalus which at the time i didnt know that, that was what was causing me these symptoms. i was then scanned which they found a lump on my pineal gland. I ended up have emergency surgery and a third ventricularostomy performed to help release the fluid. Unfortunately due to the location and my blood pressure going up they couldnt biopsy the tissue and sent csf fluid off to check for tumour markers. I have only found out today that the csf was fine but the ct scan report suggests ITS MOST LIKELY A PARENCHYMAL TUMOUR, the oncology neuro specialist nurse said that these are very rare tumours and that discussed in the MDT meeting that they didnt want to perform surgery and that they will be doing regular scans to monitor the growth. (Is this a positive thing).I dont know how long this thing has been growing for and neither do they. I work in theatre myself as a scrub nurse and have seen way too much and heard too much and have seen many cancer cases, so as you can imagine im thinking the worst, overthinking everything and just want this lump removed. The thought of having this rare tumour in my head and the possiblity of it growing, pressing on structures is making me feel so unbelievably anxious. Can i have radiotherapy to shrink it? I dont know how to feel about this whole situation. Im seeing the consultant saturday reguarding a management plan any advice on what questions to ask, i have a few questions to ask but dont want to miss anything.
Thanks everyone i hope everyone is doing okay on here.
HI Flowerpot1
a warm welcome to the group. So sorry to hear about what you are going through. What a rollercoaster of emotions for you. No wonder you are feeling anxious.
I'll be honest, this isn't a tumour I've heard of before. My own experience here is based around supporting my husband who was diagnosed with a primary stage 4 brain tumour in Sept 2020. An entirely different presentation to yours.
As far as preparing to chat with the consultant, write down all the questions that come to mind. There's no such thing as a silly question in these situations. If you have the questions written down in front of you, you are less likely to forget to any something should you end up feeling overwhelmed at any point in the discussion. I remember all too well how overwhelming those early discussions about my husband's diagnosis were.
This group is made up of some fabulously supportive people. Hopefully someone on here has some experience of this kind of tumour and can help to put your mind at rest. Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen to its worth giving them a call. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.
Another resource to explore is The Brain Tumour Charity. Personally I've found some really good insights on their pages.
For now though, stay positive. I know its hard with so many unknowns. The What Ifs are far harder to cope with than the known facts so hopefully you'll get all the answers you need from the consultant on Saturday.
I'm sending you a huge virtual hug and lots of positive light. Stay strong.
love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
